Dad was moved last week from his private room to a new shared room. He shares his (very nice) room now with a kid named Trevin. I call him a 'kid' because I'm not exactly sure how old he is. I was told that he had a brain tumor at some point in his adolescence. He is a full-grown adult in size, but his mentality is about that of a 5th grader. The only complaint Dad has had so far is that Trevin doesn't like it when Dad turns his TV up loud enough for him to hear it. Trevin is away a lot on weekends and some nights, spending time with his folks and grandparents. Last time Ashlyn and I visited, Trevin named Ashlyn "Super Princess" and myself "Super Queen" and followed us nearly out of the care center! Dad is hard to read sometimes, but hopefully he is glad for Trevin's company when he has it. Another great thing about his room is it also has access to the outside via double doors and it looks suitable to be used as a picnic area or playground when the weather warms up.
Dad saw a neurologist (Doctor Groves) last Friday, February 19th. We had arranged the appointment to see if we could get to the bottom of Dad's complaints of pain pretty much everywhere on his body. The doctor did no scans or blood tests--just talked to Dad and did a few simple "follow my hand with your eyes" tests. As we assumed, the doctor thought a nerve disease such as fibro-myalgia was a possibility, so he prescribed a remedy for that. He's been taking it since last Monday, February 22nd, and says he has not noticed a change. We will give him a while longer taking that prescription before we rule that out as a cause.
There has still been no physical improvement, obviously, since the physical therapy stopped with the cancellation of Medicare payments (which also caused his move to the shared room) in the last week or two. We are looking into ways of finding Dad some part time physical therapy. The social worker said it would cost at minimum $25-30 for just 15 MINUTES of therapy. As this cost is prohibitive for us, we are looking into other alternatives for aid. Dad could qualify for VA benefits, but only if he happens to be destitute... I believe the same is true of Medicaid. It sure seems odd that one who worked his whole life to be self-sufficient and was smart enough to have medical insurance, long term care insurance, etc., would be "punished" due to his forethought....but unfortunately, that is how it seems to work. So we kids have decided we are going to have to get Dad to qualify for assistance one way or the other. Everyone we have talked to recommends "deceiving the government" (as Dad puts it). That means getting Dad's assets out of his name so that he can qualify for aid based upon financial need. That is this week's task--trying to learn about trusts or other measures that can be taken to allow Dad to still have his assets but not have them recognized by the government. This will become especially important in a couple of years since Dad's long-term care policy has a maximum benefit of 5 years. The assets must not have been in his name for several years (we have heard 2 or 3 years) in order for the government to allow eligibility for needs-based aid like VA benefits or Medicaid.
The great news is that Dad got a set of surprise visitors yesterday. His sister, Shirley Wallander, and her husband, Greg, came down from Billings. It was sort of an accident that they surprised him. They'd come down quickly and no one had had a chance to let Dad know they'd be here until they walked into his room. He said "Well.....Shirley!" and it was pretty easy to see that he was glad to see her and Greg. He also had another surprise that same day, as I let him know that Janice had her baby on Friday morning. With Jan having her baby and myself being sick for several days, not much information had been getting to Dad since he is so darned reticent to answer his phone!
Sunday, February 28, 2010
Wednesday, February 3, 2010
February 3, 2010 (Meeting with ORN staff)
Today Brad, Janice, and I met with the social worker, the nutritionist, and the physical therapist at the care center (Orem Rehab and Nursing).
Probably the most important thing we learned today was that the PT specialist agrees with our perception--Dad has not been improving at all. The main reason for his lack of improvement is that he has, or at least *thinks* he has, too much pain all over his body to actually try to do any serious rehab. We asked them to get Dad a neurologist's opinion on how that pain could be caused (if he could possibly have fibromyalgia or some nerve disease, etc). Since he also had the swelling in his right hand this past week, some form of arthritis could be an explanation. The social worker also suggested it was possible that he was making up the pain to get attention. The physical therapist also noted that when Dad says he is in pain, his voice and facial expression are completely lacking any sign of pain--no wincing, no grunting, no raise in vocal pitch, etc., and that those details led her to believe he could possibly be making it up in his mind. Until we get to the bottom of this constant and ubiquitous pain, there is really no chance of Dad improving enough to be released from the care center.
Because Medicare will no longer pay for Dad's care if his progress stops, we will soon (within the next week or two) have to invoke Dad's long-term care policy through State Farm and use his Social Security income and other income to pay for his care. If he is being treated with physical therapy, he cost per day in ORN is $350, which amounts to more than $10,000 a month. Without physical therapy, the cost is substantially less--$145 per day. So, we need to make the decision whether we all want to go broke trying to keep Dad in physical therapy, or just give up on him.... The physical therapist is pretty doubtful Dad could ever attain any progress, but I think there is a chance that if we could get to the bottom of his pain, we could get him working hard on his rehab. Hopefully the neurologist's exam can help us make a more informed decision.
I talked with the VA people today, hoping there would be some hope for veteran's benefits, but I think that is a lost cause. Unless Dad had served in a war or during a war era or sustained some sort of injury during his army service that has become chronic, there is no benefit he is entitled to from the VA.
Dad has lost nearly 15 pounds since his stroke. His last-recorded weight (taken a couple days ago) was 160. He was 172 when he entered ORN and we think around 175 before the stroke. We've noticed this loss more in the last few weeks. His appetite seems diminished more than usual lately. The nutritionist said the nurses' records state that he takes in about 2/3 of all the food they give him, which is never cause for alarm because most people don't like every type of food they are given. We will try to bring in Dad's favorite foods more often now, since the weight loss is substantiated and we've obtained permission from the staff to bring in food whenever we want.
Dad's preoccupation with his bowels and with his hemorrhoids was also discussed today. After the meeting with the staff, we went and talked to his nurse, who is nearly positive Dad does not even have any sign of hemorrhoids. We asked her to examine him the next time they were changing his brief and confirm that. At least then we could tell Dad there is no reason for worry in that area and that the pain must not really be there, or is caused by something else.
So there was not a lot of good news today, which we were expecting. Still, it is hard to deal with decisions that will have to be made soon.
Probably the most important thing we learned today was that the PT specialist agrees with our perception--Dad has not been improving at all. The main reason for his lack of improvement is that he has, or at least *thinks* he has, too much pain all over his body to actually try to do any serious rehab. We asked them to get Dad a neurologist's opinion on how that pain could be caused (if he could possibly have fibromyalgia or some nerve disease, etc). Since he also had the swelling in his right hand this past week, some form of arthritis could be an explanation. The social worker also suggested it was possible that he was making up the pain to get attention. The physical therapist also noted that when Dad says he is in pain, his voice and facial expression are completely lacking any sign of pain--no wincing, no grunting, no raise in vocal pitch, etc., and that those details led her to believe he could possibly be making it up in his mind. Until we get to the bottom of this constant and ubiquitous pain, there is really no chance of Dad improving enough to be released from the care center.
Because Medicare will no longer pay for Dad's care if his progress stops, we will soon (within the next week or two) have to invoke Dad's long-term care policy through State Farm and use his Social Security income and other income to pay for his care. If he is being treated with physical therapy, he cost per day in ORN is $350, which amounts to more than $10,000 a month. Without physical therapy, the cost is substantially less--$145 per day. So, we need to make the decision whether we all want to go broke trying to keep Dad in physical therapy, or just give up on him.... The physical therapist is pretty doubtful Dad could ever attain any progress, but I think there is a chance that if we could get to the bottom of his pain, we could get him working hard on his rehab. Hopefully the neurologist's exam can help us make a more informed decision.
I talked with the VA people today, hoping there would be some hope for veteran's benefits, but I think that is a lost cause. Unless Dad had served in a war or during a war era or sustained some sort of injury during his army service that has become chronic, there is no benefit he is entitled to from the VA.
Dad has lost nearly 15 pounds since his stroke. His last-recorded weight (taken a couple days ago) was 160. He was 172 when he entered ORN and we think around 175 before the stroke. We've noticed this loss more in the last few weeks. His appetite seems diminished more than usual lately. The nutritionist said the nurses' records state that he takes in about 2/3 of all the food they give him, which is never cause for alarm because most people don't like every type of food they are given. We will try to bring in Dad's favorite foods more often now, since the weight loss is substantiated and we've obtained permission from the staff to bring in food whenever we want.
Dad's preoccupation with his bowels and with his hemorrhoids was also discussed today. After the meeting with the staff, we went and talked to his nurse, who is nearly positive Dad does not even have any sign of hemorrhoids. We asked her to examine him the next time they were changing his brief and confirm that. At least then we could tell Dad there is no reason for worry in that area and that the pain must not really be there, or is caused by something else.
So there was not a lot of good news today, which we were expecting. Still, it is hard to deal with decisions that will have to be made soon.
Monday, February 1, 2010
January 31, 2010
My visit tonight with Dad seemed a little more solemn than usual. Though he seems to have up and down days, I think Dad is becoming increasingly depressed. His good hand (the right one) is swollen for some unknown reason, and is painful for him to use, so when I and my family showed up around dinner time, he was glad we were there. He was sitting there staring at his tray of food with no way to feed himself, and said "Oh, well I was just going to flag a nurse down, but now since you're here, you can help me eat my dinner." Dinner was manicotti, steamed vegetables, dinner roll, and vanilla pudding. He didn't care for the manicotti, but ate most everything else.
We asked the nurse what might have happened to his hand and she suggested rheumatoid arthritis, but Dad has never had that in his life. Apparently there is a blood test that can verify if that is in fact the problem. So we have asked them to do that test. Dad suggested the injury was caused when he nearly fell off his wheelchair during a shower and tried to catch himself with that arm and hit the elbow on the wheelchair or something else that was hard.
He had been put on morphine last week due to his complaints of pain, but that rendered him too tired to go to his physical therapy, so they have taken him back off the morphine and tried Celebrex and possibly some other pain medications. We will clarify all of that at the meeting with the staff on Wednesday. He looks to me like he's losing muscle tone and that he might have lost some weight. I am also going to ask the staff to weigh him again and compare that to the weight he was when he entered the care center. I am not certain, but his knees both looked swollen to me as well, and his left arm is usually swollen and still is.
It is very difficult for us to reach Dad's doctor. I've never run into him there in all my visits. I am pretty sure the doctor had not been in to see him for possibly a month up until about a week ago. Apparently even though Dad's injury to his right hand had been noted on Saturday morning by the nurse, the doctor had not been contacted by Sunday night, presumably because it was the weekend--when I asked why they hadn't figured out what was wrong with him yet, the nurse said, "We can't call the doctor now." It seems pretty odd that a doctor would not be on call over the weekend hours. I will also express our concerns about the lack of a doctor's supervision during the meeting on Wednesday.
We asked the nurse what might have happened to his hand and she suggested rheumatoid arthritis, but Dad has never had that in his life. Apparently there is a blood test that can verify if that is in fact the problem. So we have asked them to do that test. Dad suggested the injury was caused when he nearly fell off his wheelchair during a shower and tried to catch himself with that arm and hit the elbow on the wheelchair or something else that was hard.
He had been put on morphine last week due to his complaints of pain, but that rendered him too tired to go to his physical therapy, so they have taken him back off the morphine and tried Celebrex and possibly some other pain medications. We will clarify all of that at the meeting with the staff on Wednesday. He looks to me like he's losing muscle tone and that he might have lost some weight. I am also going to ask the staff to weigh him again and compare that to the weight he was when he entered the care center. I am not certain, but his knees both looked swollen to me as well, and his left arm is usually swollen and still is.
It is very difficult for us to reach Dad's doctor. I've never run into him there in all my visits. I am pretty sure the doctor had not been in to see him for possibly a month up until about a week ago. Apparently even though Dad's injury to his right hand had been noted on Saturday morning by the nurse, the doctor had not been contacted by Sunday night, presumably because it was the weekend--when I asked why they hadn't figured out what was wrong with him yet, the nurse said, "We can't call the doctor now." It seems pretty odd that a doctor would not be on call over the weekend hours. I will also express our concerns about the lack of a doctor's supervision during the meeting on Wednesday.
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